After my eldest son’s autism diagnosis, he was placed on a waiting list for various government provided services, including speech therapy. Getting past all the gatekeepers to an actual speech therapist who is there to help my child, was a long drawn-out process that kept us as parents largely in the dark.

We had to go through our local doctor, referred on to the developmental pediatrician, then referred on to someone whose job is was to screen his speech again (though we weren’t told this was what she was doing, we thought she was his actual speech therapist), to finally seeing a speech therapist who was there to help our son.

The actual speech therapist told us we should have never been referred to a third screening; our son’s diagnosis and speech clearly always qualified him for help. At the time I was just so grateful to finally be getting the help he needed, that I didn’t hold onto any anger about being forced to jump through more un-necessary hoops and wait longer because of it, though by all rights I could have complained about the extra bother and wait associated with it.

But now they’re messing with my second-born too, and the anger is back.

My second-born has a speech delay; he doesn’t talk as much or as well as other children his age, and the difference is quite obvious. It’s not an extreme concern for us at this point; we think (hope) he’ll be OK ultimately. But because of the family history and for peace of mind, we thought it best to see someone who could decide whether he is likely to need speech therapy.

So I call Plunket and they agree I should meet with them, then I go to a Plunket nurse with my son and she agrees there’s reason for concern and refers him onto the government speech therapy service for proper assessment and eventual help if need-be. Weeks go by, no letter arrives to confirm the referral has been received (I know the system well enough to know the paperwork involved is copious and we should have got a letter or two by now). Then comes the phone call from another gatekeeper.

The caller identifies that she is from “Group Special Education” (the government body responsible for special education needs for very young children). She tells me she needs to ask some questions about my son’s speech development. I’m thinking this is a bit odd, I’ve already been screened twice (once during a phone call to see if Plunket thought it was worth setting up a meeting to discuss his speech delay, and once at Plunket itself with the nurse who agreed there was reason for concern); I was expecting any extra screening to happen in person with an actual speech therapist.

So the lady on the phone asks me some more questions, which are largely repetition of what I’ve already told everyone before her. But she also asks something which I consider irrelevant and really none of her business: “why don’t I send him to daycare?” I tell her I do take him to playgroups, and what has happened at those playgroups, but she persists, with why don’t I send him to daycare..? I pause thinking what is going on here, why is she asking me this? I don’t send him to daycare because I chose to be a full-time mum to him instead of handing him over regularly to paid strangers, and because the studies I have read say there’s no particular benefit to daycare before the age of three (in fact it can be detrimental). He sees extended family a lot, and plays with other children above and below his age, and is a highly sociable and happy child, so what’s daycare got to do with it? But I don’t voice all this, I just pause and say “he’s just two!”

She doesn’t bother to explain the daycare reference, and I’m left with the clear impression that she’s blaming my parenting decisions for his arguable speech delay. She doesn’t bother to ask if I read to him and sing to him and deliberately use speech therapy tactics with him that I learnt from my first-born’s speech therapist (all of which I do every day).

She pauses for a while, like she’s thinking something through, but I still have no idea why she’s calling because she hasn’t told me what the purpose of the call is in relation to him getting assessed. Why am I going through this all again, and why hadn’t I received a letter confirming the referral?

Finally she tells me that she’s just made the decision that she will refer on his referral. If she’s told me up-front at the start of the (highly confrontational and confusing) phone call, that she was deciding whether to refer on the referral, I would have given her the extra information that wasn’t on the referral form but was discussed in person with the Plunket nurse; like the family history and the lack of independently-formed sentences. So now that she’s finally told me the purpose of the call, I give her what extra information I can think of off the top of my head to make sure she won’t change her precious mind, and she again (seemingly reluctantly) states that she’ll refer it on.

All this, just to access someone who can actually decide whether my son even needs speech therapy. Information is not passed on from one organisation to the next, second-guessing of the decisions of other organisations and in the process slowing down access to assessment and services, all adding quite un-necessary to the parents’ stress and the child’s waiting time.

I understand that they need gatekeepers; that many parents worry about their child’s speech and the government service providers have to figure out who actually needs services and how soon. But the layers of bureaucracy, and the lack of open communication between various agencies and with the parents, is ridiculous and avoidable.

If I’d gone private instead of public, I could have seen a speech therapist straight away; not gone through all these gatekeepers. Such a speech therapist could have just told me “hey, your son is fine, no need to worry, come back if he hasn’t done X by age Y” and we’d all have got on with our lives. Or we’d figure out what might be wrong and how to address it as early as possible to limit the impact on his further development. The reason we go public – besides saving money which of course matters – is because going through the public system from the start makes it a lot easier to access any related services and help further down the line that he may need; once you’re “in the system” things are a lot easier and a heck of a lot cheaper.

I don’t see the point though of running a public service in a way that erects barriers to even getting assessed after a problem is identified. I could understand priotising services after assessment has confirmed if there is an obective problem and how severe it is, but barriers to even seeing a speech therapist to do that assessment when both parents and an organisation like Plunket has twice expressed concern, doesn’t make a lot of sense. Any money saved on therapists by not letting through the more questionable cases, is surely wasted many times over on having all these other publically paid, self-important, arrogant, ignorant gatekeepers.

My husband wants me to lay a complaint about the rudeness and un-necessariness of the call I received, but again I find myself anxious about rocking the boat; just been pathetically grateful that we’re on a waiting list and will get to see a specialist to determine what – if anything – is going on with my son.

I had a meeting with my eldest’s head teacher today to discuss his own IEP, and my concern’s about my youngest’s speech came up in passing. Her response was to congratulate me for being so aware, for picking up on the potential issue so early, and for doing something about it. This should be the attitude from those who are supposedly there to help you, rather than the barriers and belittling that seems to come part-and-parcel with the government’s current approach to children with (potential or confirmed) special needs, and their parents. I went through all this rubbish with my first-born, even when the problems were far more obvious and severe, I’d hoped access to services and had improved in the intervening years. But change requires more than hope, so maybe my husband is right; a little boat-rocking is in order.

12 Responses to Speech Therapy Gatekeepers

Thank you for writing this. Our experience has been very similar. Our wee guy is 4 and a half now, we’ve been trying to get some speech therapy since before he was 3. When the speech therapist finally came to see him, she was busy pushing a course for my daughter and not giving a proper assessment of my grandson.
I could go on for pages about the frustrating journey we’ve been on, the blaming of my daughter’s parenting, etc. We sent him to kindy for 6months, as we were also told it was “the best thing for him” and it was actually detrimental. Now we’re using iPad with educational apps and have visited the local primary school, who seem to ‘get it’ and are supportive. He could have really been helped a lot if we’d been able to get the help recommended by the paediatrician.
Just getting to the point of assessment was a huge battle, though we saw a very experienced one through the public system in the end.
Luckily for my daughter i am single, so able to live with her and my grandson, giving full time support. It is so hard to get professional help, even though our family have educated ourselves about autism over the past 3-4years and know what we’re dealing with.
I’m concerned that you still have to jump through hoops, even though your elder son is diagnosed. My daughter in the US has had such a different (better) experience with her 2 spectrummy babies – 4 and 6years old. When we began to admit the 4 year old really may be autistic, it was easy to have him assessed as his older sibling had been through their system. They have amazing support through their local school, too, so they won’t be coming home to live anytime soon :-(
PS: I’m so glad to hear the Plunket nurse was supportive and more knowledgeable this time around.

I’d also like to say how wonderful I think it is that you’re providing such heart-felt and real support to your daughter and your grandson, and clearly making such a positive difference in their lives. It’s so encouraging to read about people like you who reach out to help, and don’t give up :)

We must of spoken to the same gatekeeper. It took me an hour of solid arguing that our 2 year old was losing speech. Our public assistance lasted only a year ( he is still very hard to understand, but has a good level of comprehension). The criteria for public speech therapy in NZ is getting tighter and tighter. At the IP where he was discharged the MOE staff said its only the top 1% (ie the kids with 2-3 words or non verbal).
There was no letter confirming referral and I was lucky that our public physio found out who was assigned to our son – so I called them up to find out exactly what was happening a year after being referred.
Our son has a dx of ASD (high functioning), MOE have fully discharged him at the grand old age of 4.

It’s hard to know what to reply to that. It’s outrageous and short-sighted that children who would clearly and strongly benefit from adequate early intervention, are left to become problems further down the line, and their parents left feeling lost and unlistened to. Far from an ideal state of affairs. Sorry to hear you’ve been treated in this perfunctory manner.

I’m not sure if this would help you, but I have been using an online speech program with one of my daycare children who can not qualify nor afford traditional therapy. I really like the flexability of it. It is called Speechtails (.com). I have been reading tons about autism and ran across your blog. Good Luck!

Hi,
I’m a speech therapist in the United States who works with gen-ed students and a structured program for children with austism. Your post was very eye-opening, especially as I am currently looking for work in New Zealand. As one member of the “gatekeepers” of services at my school, I can sympathize with you about how baffling, and occasionally cloaked in mystery the process has become. My team has inherited a large population of students, after the previous team was let go. I can tell you that, unfortunately, we have many students on our caseloads who are receiving above and beyond the level of services they require. But, even more telling, we have quite a few students who are not receiving services, or ar underserved.

Unfortunately, most speech therapists in the public schools are forced to work in a caseload model, where we are judged based on our ability to provide “minutes” to each patient. Ideally, I would want to spend my days divided between early intervention with the preschoolers and therapy with the children with autism. In my district, the speech therapists are making a united effort to move to a workload model, so we can catch students with early-intervention, before they reach school-age and begin to slide backwards academically relative to their peers. I’m trying to make a case that we need a full-time staff speech therapist for our autism programs, because research shows that 30 minutes a week (caseload model) of service does not translate into appreciable gains in language development for most students.

In your experience, has the primary hurdle been to qualify your children for services? Once qualified, did your child receive the speech-language services he needed? Thanks!

Really interesting to read about your own experiences and views, thanks for sharing. As to the question of hurdles and need, qualifying for services is hard – yes – but once you qualify you’ve still got to wait on a waiting list, and then the service provided is too little and not often enough (at least in the preschool years, when it arguably matters the most). Ultimately, my eldest son did get what he needed from his early speech therapist, since she (eventually) helped us set up PECS, which was brilliant and had a very positive impact on his speech. However, with my youngest (who has a speech delay, but not autism), the service he received was very poor. I was not impressed with their efforts to identify his issues, or with the ongoing contact from the therapist (which was more about promises than ever following through). I’m not sure what she would have had to offer besides what we already knew from dealing with our older child, but at the least I would have liked to have more guidance about where his weaknesses were, whether we should be concerned, and just general support. At this point the youngest no longer requires speech therapy (I think, his speech is improving now, but no thanks at all to any speech therapist), but my eldest does still require ongoing speech therapy and gets it through his school; they at least seem to do a very good job to identifying and addressing his challenges.

The 20 minutes of speech therapy per week, provided for our son is not enough despite weekly visits to his excellent early intervention providers. The time and funding are just not available. We have supplemented this with private fortnightly hour long visits with the same therapist, which are fairly routine throughout the year apart from illness, travel or holidays. We even try to fit one or two in during the holidays. This is expensive but essential. Without these I don’t know if we would have made such progress.

Unfortunately even with the Child Disability Allowance, some family’s costs would not allow room for these extras. We can justify the financial discomfort because we can see the real progress but I am sure many families would not be able to afford this.

Anecdotal observations of the other early intervention option in our area have not been very inspiring. Waiting lists of course which I think every service has but a haphazard, infrequent and hands off approach seems to be the order of the day. I can’t really comment on it with any authority but I’m glad we did not choose that option. I have spoken with some very frustrated parents out there.

In the preschool sector the common complaint seems to be, what is the point of early detection if they are only going to put you on a waiting list and then provide frustrating and patchy services. These are supposed to be the vital, critical years. The stress it must cause watching those vital months tick by on a waiting list.

I’ve encountered the view you mention before too, the one where parents wonder what’s the point if there’s a waiting list. For what it’s worth, I always tell those people that we as parents are always the most powerful advocates and therapists in our children’s lives; the therapists only teach us the methods, we are the ones who have to implement them in the child’s everyday life. To a certain – and important – extent, we can access and learn about what is required even without access to the professionals; for example it was other parents who first told me about PECS and its high success rate, which I then researched and found out about how it could be implemented. Though I know we couldn’t have implemented it as well without the speech therapists’s ultimate guidance, the fact is she used a text book on PECS which was aimed at parents, to take us through every step of the process anyway; it was there in black and white, she just held our hands.

I absolutely agree we need the therapists there for initial diagnosis, and help to choose the best methods, and to help monitor progress. But there is a lot we can do on our own too, and charities like Autism NZ are very forthcoming with ideas to help children even before a diagnosis is confirmed.

Just to clarify though, I do agree with you, waiting lists are too long, the time with the therapists is too short, and early intervention is vital.